Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.

Thursday, February 14, 2008

Caregiving: ending invisibility

On April 27, 2004 I sent into cyberspace my first paragraph.

“Why share? I hope to make my daily life easier. One hat you wear as a spouse/caregiver is "designated medical information press agent" <grin> and this way I only have to share once a day. In a larger view, most people will have to walk this path eventually. Why buy some book, feel free to peek in….”

I did not have a clue if I had even done it correctly or if anyone would ever read a word about caregiving for Multiple Sclerosis. ‘Blog’ was what our then 16 yr old did. What was I trying to do?

45 months later this caregiving blog, “Caregivingly Yours”, has been peeked at 24,600+ times. (average: 547 “peeks” a month)

15 months ago Jackie of "LifeInBama" encouraged me to expand into You Tube videos. Sharing exploded with this 21st Century communication tool. Some time this past week You Tube viewers passed almost 4 years of readers. 25,000+ viewers have clicked and watched “Caregivingly Yours Videos". (average: 1,669 “peeks” a month)

With demand snowballing, I launched www.CaregivinglyYours.comsix (6) weeks ago. To make it easier for new readers, journal entries are categorized and entry highlights quicken any search. 5,323 hits have found the web site since its launch on December, 21, 2007. (average: 3,548 “peeks” a month)

Invisibility too often cloaks disabled people or those with a chronic illness as their needs increase. The story of the tragic death of Brenda Orr was as invisible in the news, outside of the immediate Philadelphia area, as most likely was a ‘bed bound’, 53 yr old woman with Multiple Sclerosis in life.

From that first paragraph four years ago through today’s growth sharing was also about ending invisibility.

I thank everyone who has taken a “peek”. You have enriched our journey.

Glancing around me, I admit there are not any more ‘hands’; yet caregiving sure feels a lot less alone. Thank You for joining us!

7 comments:

wow; that's amazing, Patrick!! whoever thought when you wrote that first paragraph what a wonderful service you would be doing for others almost four years later!! it is an honor to follow your journal and to see how you have taken such an overwhelming demand of caregiving and how you do it so lovingly with Patti with just the right touch of humor!

Your videos are eye-opening and sometimes, 'R' rated when Patti gets going,but I enjoy them (I am NOT OFFENDED by them... i think i have heard some of those same words coming outta my mouth) ! I'm so glad you decided to share with us, your 'not-so hands on', mostly long-distant friends. It helps to make us feel closer to you and Patti!

Congratulations on the impact your journal, website, and YouTube videos are having in the world of CareGiving... your words, advice, suggestions, tips, and explanations are very helpful, and often entertaining as well... for those already in the caregiving mode, as well as those who may be someday soon. bea

Your journal has made more of an impact than I think you will ever know. I'm trying to do the same with mine in regards to living in silence. So far I've managed to share my world and open up communication and understanding for many who didn't otherwise realize what it entailed being deaf. I do the same thing talking about domestic violence....Words have impact my friend! And your has a powerful punch to the reality of what being a caregiver is all about. (Hugs) Indigo